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Clinical and Laboratory Online Patient- and Research Database for Primary Immunodeficiencies in Switzerland

University of Zurich (UZH) logo

University of Zurich (UZH)

Status

Unknown

Conditions

Primary Immunodeficiency Disease

Study type

Observational

Funder types

Other

Identifiers

NCT01150240
PID_CH_Registry06

Details and patient eligibility

About

A Swiss national, multi-centre, online patient and research database will be created, using the existing ESID database server system. This database contains disease-specific data from patients with primary (inborn) immunodeficiency diseases (PID).

Full description

The project aims to compile clinical and laboratory data of patients with primary immunodeficiencies (PID) in order to improve diagnosis, classification, prognosis and therapy. The online technology offers features not available in former databases such as access control,security functionality, and maintenance of data integrity during transactions and system errors, online back up, online optimization, scalability and online SQL-queries as well as a long term documentation of patients.

Furthermore the database can be used for the submission and storage of molecular diagnostic results and thus allow the compilation of genotype and phenotype observations, which is of essential and immediate use for the patient himself and patient care. An attending physician may gain information on similar cases of a rare PID disease in Switzerland and European countries and use these insights for therapy. In addition, it will be possible to obtain an insight on side effects. Thus, the system also meets the requirements of an optimal platform for Phase IV studies of post-licensing drug surveillance-programs.

Enrollment

800 estimated patients

Sex

All

Volunteers

No Healthy Volunteers

Inclusion criteria

  • Primary Immunodeficiency Disease (PID)

Exclusion criteria

  • None

Trial design

800 participants in 1 patient group

Primary Immunodeficiency Disease
Description:
Patients with primary Immunodeficiency disease (PID)

Trial contacts and locations

6

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Data sourced from clinicaltrials.gov

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